Articles

Issues of Inconsistency

As Ovacome membership increases and we hear from women all over the country, it is becoming clear that standards of care vary alarmingly. There are, of course, centres of excellence but these cater for only a proportion of the women diagnosed with ovarian cancer. Elsewhere, women are not always treated by a team of specialists, and may not even see an oncologist. The speed of diagnosis and referral also varies, and often precious months are wasted.

The treatments given differ from area to area. This is highlighted by the drug Taxol, which is often unavailable due to financial restrictions - it's just too expensive. Women have had to resort to private healthcare, if they are lucky enough to be covered by insurance, or even to having fund-raising campaigns to pay for their own treatment. Of course, not everyone can do this and many women simply do not have access to the treatment that could add significantly to their remaining life.

Ovacome is interested in hearing your viewpoints on these issues, as well as your personal experiences.

...as the springs return
regardless of time or man -
so is HOPE
Sometimes but a tiny bud
that has to push up
through the hard shell
of circumstance
to reach to light
of accomplishment
Do not give up HOPE!

Update from the Treasurer

The activities at the fête in Windsor on Launch Day raised more than £1800 on the day itself, a figure increased by donations from companies who matched their employees' fund raising efforts on a £ for £ basis. Special thanks must go to the cake stall, run by Chrissie Postles and her team, which made a sizeable contribution to this total.

Sponsorship for the cyclists raised an amazing £13000, a figure which may climb as there are still one or two outstanding sponsorship forms. Remember, better late than never! Thanks once again to all the organisers, riders, sponsors and everyone who helped on the day.

There are four cyclists whose addresses I don't have, so I can't send them their certificates. The cyclists concerned are: Ben Weston, A Landes, David Newton and Thomas Newton. Please contact me at the Ovacome address for your ride certificates.

Finally, a note for all the Fone Friends representatives with regards to expenses. Fone Friend representatives may obtain reimbursement for their Ovacome- related calls provided they send me a copy of their itemised phone bill, highlighting the relevant calls.

Carrie Whelan

Fundraisers

Many thanks to all those involved in fund-raising, including . . . Tricia Tuhill for her inspired fund-raising at BT. Tricia, whose mother died of ovarian cancer, received the BT Community Scheme Award of £200 having made the application to them on Ovacome's behalf. In addition, she has raised money through her office monthly quiz and by running a highly successful Christmas raffle (£315). The last newsletter printed a poem written by Tricia and published under her mother's name, Patricia Sylvia.

Host a party and donate your 10% host gift to Ovacome. Anyone in Greater London interested in raising funds for Ovacome might like to contact Anne-Marie Sykes for a free catalogue or information on hosting Cabouchon jewellery and accessory parties. 10% of catalogue orders may then be donated to Ovacome. Call 0181-998-4812.

Cards and Mugs

Following the enormous popularity of the Ovacome Christmas cards, we are intending to launch packs of greetings cards that will be left blank inside for your own message. They will be sold in packs of ten and each card will state clearly that it has been sold in aid of Ovacome.

I would welcome designs for a cards from you or your children. It can be a watercolour, pen and ink, collage or photograph, and designs can be up to A4 size. Obviously we cannot promise that all the designs received will be used, but please do get creative.

We are also inviting designs for Ovacome mugs so please send your ideas on a piece of paper no bigger than 8 x 5".

State clearly whether your design is for a mug or card, and send it to Alexandra Dargie at the new Ovacome address by 30th April.

Tax Efficient Giving

Charities Aid Foundation

The CAF Charity Account works like a bank account. Individuals can open an account with the CAF. They then pay money into that account via covenant, Gift Aid or Give As You Earn and CAF reclaims the tax paid at 25% and adds that into the account. Individuals get a charity card and a cheque book, so they can make donations (gross of tax) to the charity or charities of their choice.

For more details contact CAF at Kings Hill, West Malling, Kent ME19 4TA (Tel. 01732-520000).

Give As You Earn

Many companies operate a Payroll Giving scheme, where the employer deducts money from an employee's pay and passes it to an agency, which in turn passes it to the charity of your choice, before PAYE tax is deducted. The donation is therefore paid gross. The maximum an individual can give in one year is £900.

Contact your employers for an application form if they operate this scheme.

Information provided by Carrie Whelan and Sarah Legg

The Mary How Trust

The Mary How Trust is a registered charity formed ten years ago in memory of Mary How who died at an early age from bowel cancer. It is an organisation that operates in and around the Sussex area from a red double decker bus! The charity sets out to provide a screening service for the prevention of all types of cancer and, as importantly, for the early detection of treatable diseases of all sorts. It also aims to promote greater awareness, especially in those that are at risk, of the early signs and symptoms of specific diseases that could be easily treated.

The screening service has developed into a remarkably full check-up for women, as important to good health as a regular service is for your car! The service is free to all, although donations are always welcome as each screening costs the trust approximately £50. All the results are confidential, for the attention of yourself and your doctor only.

For more details contact: The Mary How Trust, PO Box 1008, Pulborough, West Sussex.

Telephone: 01798 813932 (9-midday, Tues, Wed, Thurs)

Milly and Alice, whose mother Louise died of ovarian cancer, have very kindly given us their writing to include in this factsheet. It gives very personal perspectives, including Sarah Dickinson's 'Gifts to Michèle', and Alexandra Dargie's experiences in teaching Alice.

A Mother's Perspective
My Gifts to Michèle

Over the last couple of years I have put together a treasure box of memories and special gifts for Michèle. If my disease take its predicted path and I die young, I will be sure that I have left Michèle a message of love. She will know that I loved her with all my heart, that I cared so much and would have stayed to be with her if only I could.

Putting things together is incredibly hard. It seems like a failure, an admission of defeat, even to begin. And yet, I am lucky to have had so much time to prepare.

Michèle is only four years old. Her memories of me will be vague. My first gift to her is a journal, full of memories, thoughts, feelings, the progress of my disease, tales of her childhood and mine. I have tried to give her an impression of the person I am.

My second gift is a photo album. It is a record of my family and my husband's, our parents and grandparents. It shows that we were once children too, and that life continues. My spirit will live on through Michèle and through her children.

Just now I am working on the next set of gifts. It has taken me a long time to build up the emotional strength to do this. I have bought birthday presents and cards for Michèle's 12th, 16th, 18th and 21st birthdays.

Next I want to put into the box some momentoes such as her baby clothes and shoes, books that mean a lot to me, and special jewellery.

Such is my box of gifts for Michèle. I know she will treasure them, and I will not be forgotten.

During the past two years, Michèle and I have talked a lot about illness and death. I cannot hide my disease and believe she is better able to cope because both Adrian and I are open and truthful with her. For example, she was very upset when I told her I would lose my hair, but when it finally dropped out, she was fine because she was prepared. She is not afraid to ask questions if something is troubling her, and has developed compassion and understanding far beyond her years.

Michèle has a child's simple trust in God and Heaven. She knows she will miss me terribly when I die, but that Daddy will be there for her and they will look after each other. Together, they will remember me. To be with me, she will close her eyes and imagine me. Michèle is too young to fully understand the finality of death, but she is grappling valiantly with the concept, and her understanding continues to grow.

Around the home we have a selection of books that deal with grief and death. Michèle occasionally chooses these to read. They act as a trigger for discussion, making a good starting point for her to ask questions.

For now, and for as long as possible, I try to give Michèle a normal, happy, family life. This is her base for the future.

Sarah Dickinson

Sarah and Michèle

A Teacher's Perspective

Alice

Alice - aged 5

Alice wrote this response to Mozart's Requiem one morning in creative writing. She was five years and eight months old at the time and it was nearly two years since her mother Louise had died of ovarian cancer. It was the end of the school year and one of the many ways in which she had expressed her feelings about Louise's death during the year. She had always been extremely open about her feelings of both great love and loss for Louise. Throughout the year we shared many moments in conversation about Louise and she often brought in photos to share with me. Louise's death had left a void in the life of her family and although this void can never be filled, Alice's need to talk about it was a vital stage of her bereavement.

By the time Alice joined my class a year after Louise's death, she had a full understanding of the permanence of death. She understood too that Louise's love for her continued despite her death. Alice definitely felt that there was a very real and special relationship between them and there were several moments during the year in which she would stop her classmates from what they were doing and ask them to give her mummy a big wave and a smile. Alice's openness made it very easy for me to discuss death with my class. As so much of infant school children's conversation is focused around their families, Alice had mentioned, at appropriate moments, that her mummy had died. Questions such as 'But who tucks you up in bed at night?', or 'When is your mummy coming alive again?' were often asked to her as the children sat drinking their milk at snack time. Alice was rarely phased by the barrage of questions and if on occasion she felt uncomfortable, she would come and sit on my lap and say 'You can tell them about my mummy now. You remember how special she was.'

For her classmates, death was a concept they found hard to understand - partly because they had little experience of it but partly because it is not something that adults readily discuss with children. I am sure this explained their need to ask so many questions. I believe in being as honest as possible with children. Schools and class teachers, in particular, play a vital role in young children's lives and the relationship a child has with his/her teacher can affect their understanding of important issues such as life and death as well as of their place in the world.

Although it would never be right to force a child to discuss their grief, it is extremely important that adults acknowledge the bereavement that the child is experiencing and ensure that the child understands that the subject is not taboo. Children need to know that they can express their grief when they need to and that there is always someone ready to listen to them. If we do not respond to the feelings of children, they begin to think that those feelings are not appropriate. It is also important to remember that children grieve in a way that is appropriate to them. As adults we are all too reluctant to share our own emotions with children, but for a grieving child it is important that they are aware that adults feel pain and loss and need to cry sometimes, but equally that there is nothing wrong with smiling and feeling happy too. Children will often be very distressed one moment and then happily laughing with friends the next moment. Although we need to convey to them that feelings of despair, hatred and guilt are quite natural, we must also make it clear that it is fine to be happy too.

For Alice, it was crucial that her grief was acknowledged, and that together, we explained to the class what had happened to Louise. This situation arose quite naturally when, about three weeks into the term, Alice bought an album of photos of Louise for 'Show and Tell'. The other children sat motionless for fifteen minutes as she explained each photo to them and recounted her memories of her mother when she was alive. I feel that one of the reasons Alice felt so comfortable discussing Louise was because as a class we acknowledged the validity of her grief and encouraged her to believe that one day she would not feel as sad as she did then.

I feel that her classmates learnt an enormous amount from her openness. They learnt the need for sensitivity towards her at times, they learnt that sometimes no words can heal pain, but above all they learnt that death is an integral part of life, and that it brings conflicting emotions. I believe their understanding of the world is richer because of it, and if, in the future they were to suffer deep loss, they are now far better prepared for it. They understand that the pain of death cannot be removed or avoided. They definitely understood the importance of honesty in the answers to their questions as well as the need for appropriate language. They talked openly about death and dying. They understood that these were the only words that could explain what had happened. Too often adults use words such as 'gone away', which implies that the person has chosen to go somewhere without the child. We must answer children's questions as openly and as honestly as we can. 'I don't know' or 'I believe this is what happens' is preferable to glib statements such as 'Granny's gone to be a star'. In my experience this does not satisfy a grieving child, or their peers, who deserve honest answers.

As a society, the most important thing we can do for our children to help them to cope with bereavement is to open up conversation on death - children should be aware of death and some of the emotions it brings before they are experiencing them through their own loss. This does not mean sad or morbid conversations; we can, through books and nature, make children aware of the natural sequence of life and death. Opportunities such as a fallen leaf or a dead bird, for example, can be used to discuss death as a part of the life cycle. Most primary school children will experience some sense of loss or separation in their childhood, whether it be a devastating loss of a parent or close relative, or the departure of a nanny or the divorce of their parents, yet we do very little to prepare them for the feelings of isolation and anxiety that accompany such a traumatic loss. Just as we discuss, and actively teach children about birth, sex and marriage, so too should we include loss in their understanding. Children need an opportunity to express their feelings and Alice's feelings manifested themselves through her conversation, writing, artwork and music. As a result, she is an extremely happy little girl who recognizes and accepts her loss whilst always remembering Louise and the need for her life to move on without her. For me, it has been an honour to see Alice grow and change day by day and to have been able to share with her in the joy of Louise's life but also in the sadness of her death.

Alexandra Dargie

Recommended Reading List

For 4 to 8 year olds:

Badger's Parting Gifts, by Susan Varley
Waterbugs and Dragonflies, by Doris Stickney
Remembering Mum, by Jenny Perkins
Beginnings and Endings with Lifetimes in Between, by Brian Mellonie

For 11 years and upwards:

I Must Tell You Something, by Arnold Bo

Also

When Somebody Very Special Dies, by Marge Heegard

Can You Tell Me Your Story?

Were you faced with losing your ovaries, an early menopause and/or the question of HRT? If so, can you spare time to help?

Let me explain. I'm in my thirties and on HRT after a hysterectomy/oophorectomy for endometriosis two years ago. This experience made me realise the lack of information for women faced with an early menopause, for whatever reason. Since I am also a health writer, I did some research and discovered that 1 in 20 women under 40 may be affected, taking all causes together. I decided it was time to write a book which featured our problems and experiences.

Meanwhile, I'd noticed Sarah's fantastic article in Good Housekeeping. I read about her plans with great interest as a good friend of mine had ovarian cancer. And believe it or not, a similar GH article was handed to me in hospital, 15 years ago. As soon as I could, I got on a train to London: six months later, four of us helped Ailsa launch the Endometriosis Society. Yes, it's still going strong!

So I am particularly delighted to invite members of Ovacome to participate in my book. If you've had surgical menopause or HRT to prevent it, I would love to hear from you. YOUR story is important: what your experiences have meant to you.

There is no 'right' way of doing this. It is a case of imagining what you'd like to have known about early menopause/being on HRT and writing it down to benefit someone else. Still need some questions to get you going? OK, how did you feel about losing your ovaries, losing your fertility? How did you feel about surgical menopause and/or about being on HRT indefinitely? How did you manage an early menopause? If you were given HRT, what type and dose was it, how long have you been using it, any problems or side effects? Love it, hate it?

I was hoping to hear from the interested publisher before your newsletter deadline. So it is only fair to say I haven't got the formal go-ahead yet. However, I am happy to share results in a future newsletter. After all, they are your stories! No identifying material will be used and your name will be changed, unless you ask me not to.

You might like to know that I am in touch with other support groups, including Daisy Chain, for women with unexplained early menopause, and the AIS Support Group, for women born without ovaries/womb due to a rare genetic condition. I am also hoping to talk to young women who have had leukaemia. Improvements in chemotherapy mean that many of them are asking questions about long-term HRT and egg donation.

I look forward to hearing from you. Caroline Hawkridge, 92A Navigation Road, Northwich, Cheshire CW8 1BE. E-mail: 7352.104@compuserve.com